Group photo
Author:
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/30/09 5:38 P

My SparkPage
Send Private Message
Reply
Lester, Welcome to the team. As is different for each person. It can be the AS that affects one side more. On my it is my left side. When I first was diagnosed it was very severe on the left side while the right side showed very little signs. My left shoulder was the most affected and I have very little motion with my left arm now. But make sure to talk to your doctor and if he just ignores it push him more to get an answer.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
248
235.75
223.5
211.25
199
LESTERJOHNSON's Photo LESTERJOHNSON Posts: 278
5/30/09 4:54 P

Send Private Message
Reply
Hello everyone! I'm new to SP. I'm still trying to find my way around the website.
I'm 59 yrs. old. Soon to be 60 in July,09. I'm married 32 yrs. to my wife Angela, and we have one son, Derek. Oh, yeah, can't forget PJ our Yorky.
I am retired.
I've been recently diagnosed with AS. I'm taking Humira. Have only had 3 shots so far. I've gotten some relief, but on my left side there is a pain that just won't quit. Does anyone know if this is common? Or is AS just different for everyone? Nice talking to you. Lester

Can't light a fire without a spark!
Bruce Springsteen


 current weight: 251.8 
258
234.75
211.5
188.25
165
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/26/09 6:10 P

My SparkPage
Send Private Message
Reply
Welcome, Roblee2, to the team. Exercise has been the best benefit for me in controlling the pain. The treadmill is a good start. Start out slowly and work it up.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
248
235.75
223.5
211.25
199
ROBLEE2's Photo ROBLEE2 Posts: 104
5/23/09 10:39 A

My SparkPage
Send Private Message
Reply
Good Morning

I joined SP in January and at my leisure looking/reading differed teams that may fit my needs. I was pleased to see one on AS and not just RH or arthritis, as I have been diagnosed several years ago.

My goal is to lose weight and excise to manage my pain. My Rheumatolgist wants me on Humara, which I can't afford and wouldn't go on if I could. The side affects of most of the drugs are to high for me.

I have lost a Kidney to cancer, female organs to very large benign tumors, my colon to UC. I have been on a multitude of drugs for the last 15 years (I am 55 - it all started when I turned 40 - go figure). I have had medical professional amazed that I'm still here - I tell them its Gods Plan what ever that might be. So with that being said, I believe I am at to high of risk to take a drug that has the potential to give me cancer regardless of what any of my good Docs say (it is called practicing medicine).

I did just get a treadmill to start walking. I am also thinking of getting a wii fit - any one else have one? what do you think of it?


emoticon

Nothing Tastes as good as Thin Feels.


 current weight: 240.1 
246
222
198
174
150
HALF2EAT's Photo HALF2EAT Posts: 253
3/31/09 5:00 P

My SparkPage
Send Private Message
Reply
emoticon ARATIKJOHN

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
HALF2EAT's Photo HALF2EAT Posts: 253
3/13/09 12:39 P

My SparkPage
Send Private Message
Reply
emoticon BURYTINA!

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
3/5/09 12:31 P

My SparkPage
Send Private Message
Reply
CBPIPER, You asked if anyone does physical therapy for there AS. When I was first diagnosed in 1999 I was sent to PT and it helped relieve the pain. I was sent back again in 2002 because the pain in my neck was so bad I could not even think right. Each time the PT really helped. But because insurance companies are the so restrictive I was not able to return. Just last year, in November, My doctor decided that I could use therapy again. By this time I had absolutely no flexibility in my back and neck and was in a lot of pain.

Restarting the therapy was the best thing I could have done. I now have some flexibility in my neck - went from a 10 degree rotation to a 50 degree rotation. My pain level is way down - on a scale of 1-10 it was an 8 before and a 3 now. My lower back still hurts a lot if I set at my desk to long but if I move around and go set at the couch for a while the pain goes back down. My stiffness is also reduced. The PT gym offered a gym program so I joined that. I still get monitored by the therapist but she does not spend the whole time with me. I would recommend therapy to anyone with AS. It really helps. The only draw back is that my fatigue level is very increased. My doctor told me that it is a trade off with pain or fatigue and that the fatigue is just part of the disease. Does anyone have a solution for the fatigue?

As far as using Humira for the AS, I was on Remicade for 1 year as part of a medical trial. It is very similar to Humira. It was wonderful. I felt more like a normal person and a lot less pain and hardly any stiffness. I overall felt a lot better when on it. Unfortunately after the medical trial ended I was unable to stay on the medication because at that time I was on Medicaid and they would not pay for it. I need to find out if Medicare will pay for it.

For exercising I use a recumbent stationary bike for cardio. I love it. I get a good workout with out the pain that I would get from a regular stationary bike. I then use a treadmill. I do a bunch of exercises using resistance bands for my arms and shoulders. Then I have some that I use very light free weights - two to five pounds, Then Leg presses. Then I do some exercises with a gym ball where I lay on my back and have the ball under my feet and then I roll it back and forth then I do bridges with it. The final exercise is leg lefts. Then I finalize everything with stretching exercises. In all it takes me an hour and a half to do the routine. But it is worth the time because of the pain relief I get.

When I first started the therapy in November I thought I was going to die while doing them. Five minutes on the bike and treadmill was enough to make me want to curl up and cry. Then I had to do the other exercises. To begin I did one set of five of everything else. As I said I thought I was going to die from the pain it caused. I did not think this was going to help me at all and thought it was going to make things worse. The therapist slowly add more time and more reps and increased counts. Every time I thought I could finally do it without more pain she would increase it. At the end of the first month I was finally able to do 10 minutes on the bike and treadmill and three sets of ten on all the other exercises. I still thought it was going to kill me but then she took my range of motion measurements and I was surprised at how much I had improved. At the end of the second month I could do all the exercises without it causing me to be in pain so we started increasing the cardio exercises to 20 minutes on each the treadmill and the bike. I now do this as a maintenance level and will keep the same amount from here on out. And it makes me feel good!

As a note I tried the Elliptical Trainer. I thought it was fun. But five minutes on it had my asthma so bad that I had to use ten puffs of my inhaler before I could breath again. The therapist said that it was not an exercise for me.



Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
248
235.75
223.5
211.25
199
HALF2EAT's Photo HALF2EAT Posts: 253
2/24/09 6:15 P

My SparkPage
Send Private Message
Reply
you are emoticon



Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
2/24/09 12:40 P

My SparkPage
Send Private Message
Reply
Thank you for the welcome, Erin.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
248
235.75
223.5
211.25
199
HALF2EAT's Photo HALF2EAT Posts: 253
2/23/09 10:03 P

My SparkPage
Send Private Message
Reply
1grnthumb, (mark?),
The pleasure and thanks are from me, I'm sure! We will help each other along the way. I really appreciate you sharing and also that you stumbled across the link. i think we will all make great friends. I'll be around a lot more wed. Have to wrap it up for some zzzzzz's for tomorrow, but i can't wait to catch up witth you so i'll check for you on and off tomorrow. Stay strong!!

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
2/23/09 10:36 A

My SparkPage
Send Private Message
Reply
Hi, I am new to this group. Think you Erin for the link. I was diagnosed with AS in 1999. It is severe and has fused my ribs together causing what the doctors term as Restrictive Lung Disease because I have no chest expansion when I breath and it has caused me to have severe asthma and recurring lung infections. I have a lot of pain in my neck, shoulders and back from the disease and have a very limited range of motion. I have been going to Physical Therapy since mid November and it has reduced my pain level and has slightly increased my range of motion.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


 current weight: 199.0 
248
235.75
223.5
211.25
199
HALF2EAT's Photo HALF2EAT Posts: 253
2/22/09 11:00 A

My SparkPage
Send Private Message
Reply
PLEASE go visit a rheumatologist if you haven't by now. You will need a bone and joint scan. It is the only way to detect AS or any of it's "sister" diseases. It certainly sounds like it to me. And I'm not sure if you saw my intro letter but my motto is " Sick until proved healthy"!!! Please keep me posted.

erin

PS- You may need a referral from your family doctor. Ask them if they know who the best one to go to is.

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
60SIXTY's Photo 60SIXTY Posts: 25,074
2/22/09 7:36 A

My SparkPage
Send Private Message
Reply
I just joined. I don't know that I belong here, as I am not diagnosed. I am an RN, retired less than a year ago. Due to an array of medical issues.

I have suspected I have AS for years. However, my doctors always find a different diagnosis. My family doctor prefers to think I have fibromyalgia, although the specialist he sent me to never diagnosed it.

If you don't mind, I will list my symptoms, in part to see what some of you think.
*Scoliosis diagnosed at age 5. Some doctors think this is the cause of almost everything else. Never properly treated even though my parents took me to multiple specialists.
*Muscle spasms of back since childhood. Muscle relaxers since age 12. Now use Flexeril. Had to quit working for over a year and a half due to severe spasms in 2005. [Family doc thinks Fibro. Literature doesn't seem to agree]
*Osteo-Arthritis of Spine diagnosed at age 23 when being treated for pneumonia.
*Spontaneous or birth defect: fusion of several lumbar vertebrae on one side only. DX by Chiropractor about 8 years ago. He didn't think it was AS, but a birth defect.
Family doctor agrees with him.

I have had full spine & brain MRI in 2005. At that time they found a pituitary tumor and didn't tell me, so I have to wonder what else they didn't tell me. I was told that the testing showed no surprises....nothing that I didn't already know. Several years later, when I had repeated episodes of near fainting & other symptoms of possible stroke, the pituitary problem was found. It has been monitored since and is benign.

I saw eye problems mentioned on another thread. I have been to eye doctor more than once to rule out PINK EYE because it was required by my job to be checked. Both eyes were fiery red. I have sharp pains in and behind my eyes as well. I am diagnosed with allergic eye problems. This is possible since I have a lot of environmental allergies. Also the eye allergy drops help.

*Past year, I have been having rib pain. Either near the spine or near the sternum. I told my family doctor about it the end of August, 2008, as it was becoming chronic & increasing in intensity. During exam, he put pressure on my rib cage that was painful, but passed within seconds. I have been short of breath since I was in my 30s but that is getting worse as well. 2 days after exam, I awoke with severe rib pain on one side. Pain subsided when I got out of bed. I waited two more days and went to the doctor. Was diagnosed with pneumonia a partially collapsed lung. They couldn't find anything wrong with my ribs. Went through pulmonary testing a month later that was negative.

I have been doing an exercise routine taught by a PT since 2005 that is helpful. I am 60. My husband isn't the most sympathetic, although I think he has a lot of pain from arthritis himself. One of my daughters has lupus. We most certainly understand about people telling somebody who is sick that they don't look sick. My daughter hears that a lot. I think she looks sick.

Found you from the post on the introduction message board.
PS: I don't show teams on my spark page that are related to my medical issues.

Edited by: 60SIXTY at: 2/22/2009 (07:41)
Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

"To lose a healthy one pound of fat per week, all it takes is a 500-calorie deficit per day."


 Pounds lost: 56.2 
0
15.25
30.5
45.75
61
HALF2EAT's Photo HALF2EAT Posts: 253
2/16/09 2:07 P

My SparkPage
Send Private Message
Reply
WELCOME JODEBRY!!!

emoticon

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
HALF2EAT's Photo HALF2EAT Posts: 253
2/16/09 1:08 P

My SparkPage
Send Private Message
Reply
Jamie,
Nice to meet you and please stay fired up!! Don't ever apologize for helping us, you're an inspiration for us that are new to this. Without your story we might get stuck in a depression. We all need to hear positives that comes from this, and that is why we are here! Our goal is to make AS known WORLD WIDE!! You w and your story will be a part of tat some day. So, no apologies and let me say, thank you! Thank you for joining our team and thank you for that ray of sunshine sown this long, sometimes dark journey.

Make it a Great Day!!
erin :)
co-leader- ankylosing spondylitis
http://www.sparkpeople.com/myspark/gro
ups_individual.asp?gid=24962


 Pounds lost: 19.0 
0
4.75
9.5
14.25
19
LUNDBERG99's Photo LUNDBERG99 Posts: 9
2/16/09 12:42 P

My SparkPage
Send Private Message
Reply
Hi Jamie!
emoticon & thank You for the tips. I too found that Yoga was helpful to me. The exercises that do not have the repetitive motions seem to agree better with my body. Its great to hear that you have made such progress with the Pilates. Congrats!

 current weight: 240.0 
250
232.5
215
197.5
180
JAMIEHARLEY Posts: 2
1/28/09 3:20 P

My SparkPage
Send Private Message
Reply
Hi all. I was diagnosed with AS four years ago after seven years of living with terrible pain. I was an athlete in college and even all of the specialists that I had access to couldn't help me. It wasn't until my first bout with Iritis that an eye specialist had me tested for HLAB27 and Ankylosing spondylitis was confirmed. This disease really gets me fired up. Most doctors don't know that much about it and so all they do it drug us up. I had one drug and then another and then a third, then i got depressed, so yet another. It wasn't until i said NO MORE, this cannot be the way. I am not even 30. So this is what I did...

I stopped feeling sorry for myself that i couldn't walk, or sit down, or sleep, or eat right with out my back screaming back at me. I found a book that saved my life and i hope it will help others out there, it is "Return to Life through Contrology". Simply stated it is pilate's before it was called pilate's. I love it and have gone through two copies.

To everyone out there that wants hope. It's inside of you waiting to come out. After my joints got limber, I started to walk, then jog, and finally I just ran a half marathon in October with NO PAIN and NO MEDS. I am so happy. Sorry so long winded as I said earlier this disease really fires me up. Have a great day. emoticon

CBPIPER Posts: 24
1/23/09 11:48 P

My SparkPage
Send Private Message
Reply
I think I am doing better. It isn't that bad of pain it just gets worse if I do the elliptical right now.

Anyone doing physical therapy for it? I have done physical therapy but not since my diagnosis.

SHEILARENEE's Photo SHEILARENEE Posts: 133
1/23/09 4:29 P

My SparkPage
Send Private Message
Reply
Good luck on the Humira! I've heard it works wonders but I haven't tried it yet. My knees and feet had gotten so bad I could barely walk and my Rheumatologist started me on Mobic (anti-inflammatory) and Ultram ER. In about a week I felt like a new woman. While your knees are feeling so bad I would skip the walking and things like that. Stretch, take a nice hot shower and give the Humira time to work. Keep us posted on your success! Love and prayers,
sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
CBPIPER Posts: 24
1/23/09 4:23 P

My SparkPage
Send Private Message
Reply
I used to be able to walk miles. Now I can't even use a treadmill at all and I can probably walk less than a half mile outside. I have an elliptical machine. It has been bothering my back and knees lately. Does anyone else have knee pain with their AS? I read that if it goes untreated that you can have knee pain. I am sure I have had AS for several years, but it wasn't diagnosed.

CBPIPER Posts: 24
1/23/09 4:19 P

My SparkPage
Send Private Message
Reply
Hi,

I was recently diagnosed with AS. I just started Humira. Anyone swim? I have been swim, except the last month. It seems to help. I have an elliptical machine at home, lately it has been bothering me. Also I can't walk like I used to, I used to walk miles and now if I walk about a half a mile I am in pain for about a day.

SHEILARENEE's Photo SHEILARENEE Posts: 133
12/28/08 5:58 P

My SparkPage
Send Private Message
Reply
Hi Tami and emoticon ! Looking forward to sharing tips and tricks. Hope you had a wonderful holiday season.
~Sheila emoticon

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
TAMICLOUSE's Photo TAMICLOUSE Posts: 18
12/27/08 8:23 P

Send Private Message
Reply
Hi everyone my name is Tami. I had JRA since was 5 and was re~diagnosed about 2 years ago with RA. My Rheumie was concerned about AS because I have along history of back problems including 3 surgeries. So after a series of tests it has been determined that I do in fact have AS. I take methotrexate for the RA but it doesn't help the back. I started enbrel this past summer and it has saved my life. relatively no back pain. I still take 800mg motrin at night to help with sleeping because I get so stiff.
I am so glad to have found this group!! Unless you battle what we do people don't understand. Yes we look fine, but the painful disease is the rages inside us is often unbearable. We can help each other through each day!! emoticon Tami

"We all fall down, its the getting back up that really counts"!


 current weight: 186.0 
187.5
180.625
173.75
166.875
160
TAMICLOUSE's Photo TAMICLOUSE Posts: 18
12/27/08 8:21 P

Send Private Message
Reply
Hi everyone my name is Tami. I had JRA since was 5 and was re~diagnosed about 2 years ago with RA. My Rheumie was concerned about AS because I have along history of back problems including 3 surgeries. So after a series of tests it has been determined that I do in fact have AS. I take methotrexate for the RA but it doesn't help the back. I started enbrel this past summer and it has saved my life. relatively no back pain. I still take 800mg motrin at night to help with sleeping because I get so stiff.
I am so glad to have found this group!! Unless you battle what we do people don't understand. Yes we look fine, but the painful disease is the rages inside us is often unbearable. We can help each other through each day!! emoticon Tami

"We all fall down, its the getting back up that really counts"!


 current weight: 186.0 
187.5
180.625
173.75
166.875
160
REGANDINIUS's Photo REGANDINIUS Posts: 3
12/21/08 10:05 A

My SparkPage
Send Private Message
Reply
Sheila:

When I started, I was walking on a treadmill - just 20 minutes at a time and at a very slow pace. Now, I can walk for over an hour at a pace of 3.5 miles/hr. At times, I can even jog a little, but my back lets me know when it is too much.

I also do weight training (arms, legs, and abs). At times, my trainer will have me do something and after 1 or 2 reps, I say no. Basically, I listen to my body and do as much as I can.

Keeping up with exercising and eating less has allowed me to drop the weight, which I know is making things better. That with the drugs, makes my life more active now than I was when I was in high school.

Jeannie

 current weight: 167.0 
168
158.5
149
139.5
130
SHEILARENEE's Photo SHEILARENEE Posts: 133
12/20/08 4:10 P

My SparkPage
Send Private Message
Reply
Hi Jeannie and Welcome! emoticon

I was surprised to find the group as well. I've only been diagnosed for a few months, so I'm still adjusting. What sort of exercises do you do? I'm still trying to figure out what will work and I'm a little hesitant. Look forward to hearing from you! Be well emoticon
~Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
REGANDINIUS's Photo REGANDINIUS Posts: 3
12/20/08 4:01 P

My SparkPage
Send Private Message
Reply
I just got started on Sparkpeople and was floored to see a group devoted to AS! I have had it for what seems forever, but only diagnosed for 3 years ago. Have been on Remicade for two years now, which has allowed me to start exercisting. So far, I have lost 30 lbs with a goal of about 20 more. I hope Sparkpeople will re-energize my weight loss journey.

I'm 36 female, married - no kids. I work a desk job, with some field work so I don't get to exercise much unless I work it in. I joined a gym about 1 year ago and got a personal trainer. He basically understands my disease and helps me work to be stronger, more active, and thinner. The 30 lbs off has certainly helped my disease- way less for my frame to carry.

Hope to hear from all of you soon.

Jeannie

 current weight: 167.0 
168
158.5
149
139.5
130
STORMIE62's Photo STORMIE62 SparkPoints: (59,752)
Fitness Minutes: (47,423)
Posts: 1,739
11/21/08 9:30 A

My SparkPage
Send Private Message
Reply
Hello Mary and Welcome to the Team. So glad you found us.


emoticon emoticon

The pain of being overweight is soothed by the effort of exercise and eating healthy.

" I am not always slow moving, but when I am, it is because I am practicing Tai Chi."


 Pounds lost: 13.0 
0
25.75
51.5
77.25
103
SHEILARENEE's Photo SHEILARENEE Posts: 133
11/21/08 6:57 A

My SparkPage
Send Private Message
Reply
Hi Mary,

Thanks for sharing your story! I also think its funny that this is a "man's disease" but I've yet to meet a man with it. I've met a few folks locally-all female. All of are trying to find what works for us and I appreciate your experience. What's your overall experience with biologics? I've been a little nervous about trying them.
Thanks!
Sheila emoticon

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
JOURNEY557's Photo JOURNEY557 SparkPoints: (17,772)
Fitness Minutes: (7,051)
Posts: 243
11/20/08 8:06 P

My SparkPage
Send Private Message
Reply
Hi everyone, like everyone here, I've been diagnosed with AS, that was 4 years ago, I'm 51 now.

I had always had lower back pains from childhood, but my parents thought it was from my abused childhood. (I was adopted at age 9) My doctor said that AS can sometimes start from a "trauma" to the back. Well, I could tell you a few "trauma" stories that could have left me weak in my back.

Anyway...my doctor put me on Relifen, which she said is for inflamation. That was after I had gone through some other anti inflamatories that upset my stomach. Then she put me on Enbrel after about 6 mos, and to me that was a miracle drug. I went from hardly being able to walk, to having my life back. I swore by it for almost 2 years.

Then I think I started to build up a tolerance to it. I went from one shot a week, to a shot twice a week. At that point Doc put me on Humera. I've been on that for a year, one shot every two weeks. It did do good for awhile, but here lately,its not cutting it. I'm afraid she's going to move me to the IV one. I have a co-worker on that, and it really messes her up.

Anyway...this story is getting long. One of my bosses told me about a "pain management" doctor that he sees. (He also does acupunture). I finally made a appointment with him last Feb. He sent me through 6 weeks of therapy, twice a week. After that he gave me some "trigger point" injections, and they really did help. I've had those 3 times, (about every two months). This last one didn't work so well.

I, like everyone here, have been working on losing or at least NOT gaining weight. With all the pain, and meds, plus I work at my desk all day long...its been very hard to do. My husband (of 9 years), is beginning to get tired of my complaints. Hence, I'm here, hoping like everyone, to find hope, help, and just plain comfort.

As bad as it sounds, it does help to know that I am not suffering alone.

Oh, how many of you have heard "this is a man's disease"? There are actually doctors that have told me this!

Vist my Sparks page for more on me.

Mary emoticon

I still find each day too short for all the thoughts I want to think, all the walks I want to take, all the books I want to read, and all the friends I want to see.
- John Burroughs, essayist and naturalist


We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, and all are different colors.... but they all have to learn to live in the same box.

♥.*)♥ -::- ♥~**♥~.* ) ♥
Mary


 Pounds lost: 3.8 
0
6.75
13.5
20.25
27
LUNDBERG99's Photo LUNDBERG99 Posts: 9
11/9/08 8:38 A

My SparkPage
Send Private Message
Reply
Hi Pam,
Welcome to the group! It seems like you have always been active...I know one activity that helps me is Yoga. When I started doing it my back and hips felt much better. It can be a little rough getting down on the floor but a mat & yoga pillow help. I just had surgery so I haven't been able to take classes the past few months & can't wait to get back!

Cindy

 current weight: 240.0 
250
232.5
215
197.5
180
LUNDBERG99's Photo LUNDBERG99 Posts: 9
11/9/08 8:30 A

My SparkPage
Send Private Message
Reply
Hi Dahna,
Thats pretty much what they did with me too. Although I went through a variety and due to interactions with my other meds I ultimately have not been on meds for my AS. My primary suggested I go back to my Rheumatologist though as I recently have been getting inflamation in my hips that she thinks may have been causing issies with my blood flow.

I thought creating the group would be a great idea to see just how many women are affected. I was told its extremly rare in women but yet both my sister and I were diagnosed which they say is even more so. Maybe they need more studies in women than they think?

Thanks for your message!

Cindy

PS Warm showers are definately a life saver for me!

 current weight: 240.0 
250
232.5
215
197.5
180
SHEILARENEE's Photo SHEILARENEE Posts: 133
11/1/08 9:11 A

My SparkPage
Send Private Message
Reply
My MD has suggested the biologics as options to consider "soon". I would like to avoid them though, as I'm leery about suppressing my immune system too much. I'm a RN and I work with all sorts of yucky illnesses and infections. I'm currently taking pentasa and imuran and hope I'll respond better in the coming weeks.

It's great to hear from you! We can all share ideas. Have a great day! ~Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
DJCARR Posts: 165
11/1/08 4:46 A

My SparkPage
Send Private Message
Reply
Hi I'm Dahna (pronounced like Donna). I was diagnosed with RA in my 20's but it was re-diagnosed as AS in my mid 30's.
Take Celebrex twice a day, Sulfazine twice a day, Medrol (steroids) once a day, and Lyrica twice a day. Take a several other drugs for Thyroid disease, Fibro. and Migraines.

Rheumatologist recommend that I go on Enbrel or Humira soon. Anybody take them?

It takes me about an hour or more to get going. Very "hot" showers are great.
Glad to meet you all.

Unusual that there are so many women in this group for a health challenge - ankylosing spondylitis - that is supposed to affect mainly men!

Regards,
Dahna

 Pounds lost: 3.0 
0
28.5
57
85.5
114
STORMIE62's Photo STORMIE62 SparkPoints: (59,752)
Fitness Minutes: (47,423)
Posts: 1,739
10/30/08 8:02 P

My SparkPage
Send Private Message
Reply
Crawl to the hot shower, about 10 minutes of standing under it, then I do a few easy stretching movements then 15 minutes of serious stretching then coffee and morning routine exercises and then I go do barn chores by 8:am I am loosened up enough to either ride the harley or walk the dogs a mile or two.

The pain of being overweight is soothed by the effort of exercise and eating healthy.

" I am not always slow moving, but when I am, it is because I am practicing Tai Chi."


 Pounds lost: 13.0 
0
25.75
51.5
77.25
103
SHEILARENEE's Photo SHEILARENEE Posts: 133
10/30/08 7:55 P

My SparkPage
Send Private Message
Reply
Sounds like we're operating on a similar plan! My Dr recommended the extended release Ultram and it has been a blessing. It made me drowsy for the first two days, but no problem after that. It's really cut down on the amount of tylenol I use, and I can't take NSAIDs very often because I have Crohn's. My MD suggested muscle relaxers but I haven't tried them yet. He mentioned flexeril and skelaxin. Guess I'll try'em next round.

How long does it take you to "get moving" in the mornings? That's been my biggest on-going complaint so far. Luckily, I have a night job because it takes me about two hrs to get "warmed up".

Has you Dr talked about any of the biologic agents like Humira or Enbrel yet?

Be well!
~Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
STORMIE62's Photo STORMIE62 SparkPoints: (59,752)
Fitness Minutes: (47,423)
Posts: 1,739
10/30/08 6:58 P

My SparkPage
Send Private Message
Reply
Well, I take Exciderin Back and Body plus a Lyrica 75mg and a muscle relaxer for when my back locks down on me. For the most part, I am just stubborn enough not to give in to the pain, to much living to do. As my hubby says, "You just grin and bare it until enough is enough." Thats when I turn into a bear and growl for meds and hibernate LOL!

The pain of being overweight is soothed by the effort of exercise and eating healthy.

" I am not always slow moving, but when I am, it is because I am practicing Tai Chi."


 Pounds lost: 13.0 
0
25.75
51.5
77.25
103
SHEILARENEE's Photo SHEILARENEE Posts: 133
10/30/08 1:14 P

My SparkPage
Send Private Message
Reply
Hi Stormie, It's great to meet you! I'm sorry you've gotten such a crappy diagnosis but maybe we can make the best of it. I'm still working on incorporating an exercise/stretching program but I haven't been really diligent as I should be. What kind of pain meds do you use? I take 200 mg Ultram er daily and I also use Tylenol and Darvocet (2-3 x wkly). Sometimes this works and sometimes not. I'd love to hear from you. This is a fairly small group, so sometimes its pretty quiet. Wishing you well and looking forward to hearing from you!

~Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
STORMIE62's Photo STORMIE62 SparkPoints: (59,752)
Fitness Minutes: (47,423)
Posts: 1,739
10/30/08 12:25 P

My SparkPage
Send Private Message
Reply
Hello I am Stormie, I am 46 and just 4 months ago was told by my Doctor that I now have Ankylosing Spondylitis in addition to the Scoliosis that I was diagnosed with at 17. Losing weight and doing toning and stregth exercises have helped alot. Having to take less pain meds now. But there are days when I get down and not having anyone who really understands can be depressing. But now perhaps that will change too.

The pain of being overweight is soothed by the effort of exercise and eating healthy.

" I am not always slow moving, but when I am, it is because I am practicing Tai Chi."


 Pounds lost: 13.0 
0
25.75
51.5
77.25
103
SHEILARENEE's Photo SHEILARENEE Posts: 133
10/13/08 7:46 P

My SparkPage
Send Private Message
Reply
Hi Pam,

It's great to hear from you so fast! I am still working but had to make huge changes when I was diagnosed with Crohn's I have been on a really complicated medication regime for about four years, so adding a few more pills hasn't been too bad (approx.28 daily) but the pain has been awful. I'm currently using Darvocet, Ultram and Celebrex. I've also started stretching daily and need to incorporate other things--just haven't done it yet.

Currently, I work part-time as a float nurse in a local hospital and have a part-time telecommuting job with a local mental health group. Hopefully I'll be able to keep this up for a while, but I'm looking to the future and preparing for other employment options. I'm a single mom with a 17 y/o at home plus a herd of animals to care for. Every day is a new adventure!! I'm interested in anything you've found to be helpful. I'm spending way too much time recovering on the sofa!

Thanks!
Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
MSPAM60's Photo MSPAM60 SparkPoints: (0)
Fitness Minutes: (12,331)
Posts: 156
10/13/08 7:25 P

My SparkPage
Send Private Message
Reply
Hi Sheila,
I know what it means to have people say to you "but you don't look sick". And I feel sooooo bad when I complain or have negative thoughts to my husband or family. My job was sooo physical, but I loved it for that, I had to retire early. I've been to the pain clinic for injections, I take pills, do exercises, but my life as it was is no longer. I had to take control of my life again & not just sit & feel sorry for myself ( & gain 20 pounds in 3 years). Now I do water aerobics 3 times a week for an hour or more & I'm on a pill regimen that actually works (sometimes ) I do have some bad days! Are you still working? Sheila, you just have to learn to do things differently, figure out what works & what doesn't. I hope I can help keep you & others motivated along with you & others helping me. God Bless,
Pam


To insure good health: Eat lightly, breathe deeply, live moderately, cultivate cheerfulness, and maintain an interest in life.

- William Londen



 Pounds lost: 0.0 
0
7.25
14.5
21.75
29
SHEILARENEE's Photo SHEILARENEE Posts: 133
10/13/08 7:06 P

My SparkPage
Send Private Message
Reply
Hi, my name is Sheila. I'm a 43 y/o nurse in KY. I was just diagnosed with AS this month and I'm trying to adjust. Four years ago I was diagnosed with Crohn's disease so I've been adjusting to that as well. I can totally relate to complaining to friends and family. Sometimes they don't understand because I still look "normal". Maybe we can motivate each other!
Love & prayers,
Sheila

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


 current weight: 134.5 
139
134.25
129.5
124.75
120
MSPAM60's Photo MSPAM60 SparkPoints: (0)
Fitness Minutes: (12,331)
Posts: 156
9/28/08 11:16 A

My SparkPage
Send Private Message
Reply
Hi, my name is Pam, I'm 61. I also was diagnosed with RA/ankylosing spondylitis about 3 years ago. I've always been so active, biking, walking anything outdoors that was physical. Even my job was physical. I had to stop working 3 years ago. What a challenge this has been. I don't want to complain to my husband or family anymore, so I thought I could find others that understand. Hope to hear from anyone that would listen & give me some insight as to what they are going through or what they have done to make life easier. Looking forward to hearing from you. Pam

To insure good health: Eat lightly, breathe deeply, live moderately, cultivate cheerfulness, and maintain an interest in life.

- William Londen



 Pounds lost: 0.0 
0
7.25
14.5
21.75
29
Page: 1 of (1)  

Report Innappropriate Post

Other Ankylosing spondylitis is anky-losing bad habits! Introduce Yourself to Team Forum Posts

Topics:
Last Post:

Related Topics: Calories Burned Walking   Calories Burned on Stationary Bike  

Thread URL: https://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x24962x18871402

Review our Community Guidelines